CONFERENCES

RareX Conference in South Africa

By Rageema Livingstone, President of the South African OI-association (Associate OIFE member) For four days, Johannesburg pulsed with the collective energy of hope and collaboration as RareX unfolded, hosted by Rare Diseases South Africa (RDSA). This pivotal event, held from February 14th to 17th, 2024, brought together a diverse tapestry of voices – patient groups, healthcare…

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CONFERENCES

Remedi4All – Meeting on OI in Bologna

The Remedi4All consortium & the MOI-A Trial (Losartan) Information provided by Claudia Fuchs, EURORDIS What is Remedi4All? The EU-funded multidisciplinary consortium REMEDi4ALL (Repurposing Medicines for All) has an ambition to establish a European research and innovation eco-system that facilitates fast and cost-effective patient-centric development and implementation of repurposed medicines, meeting high unmet medical needs in…

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CONFERENCES

OIFE Investigator Meeting – a success

On the 17th of November 2023, OIFE hosted the second Virtual OIFE Investigator Meeting for the OI research community. 273 people from 48 countries signed up and more than 160 individuals attended the online event. Attendees were a mix of health professionals, scientists, OI clinicians and a lower number of representatives from industry and patient…

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CONFERENCES

Balancing Life with OI – now on YouTube!

Most of the talks and presentations from OIFE’s topical meeting “Balancing life with OI” in Stockholm June 2023 are now available with English subtitles in OIFE’s Playlist on YouTube. You can have auto texting in other languages, by clicking on settings. The various talks cover the causes, assessment, and management of pain in OI and…

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CONFERENCES

Impressions from “Balancing Life with OI”

OIFE’s 5th Topical Meeting “Balancing Life with OI” took place in Stockholm, Sweden, in June 2023. The main topic of this international conference was pain in OI and its impact for instance on physical and mental health, sleep, fatigue, mobility, relationships/families and work/life balance. Here are some impressions from participants: Alessandra Tolaccia My name is…

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CONFERENCES

Sweet home Chicago – OIF Scientific Meeting

By Dr. Lars Folkestad, OIFE Medical Advisory Board Every year the OI Foundation (OIF) host a Scientific Meeting where researchers and clinicians from North America is invited for a 2-and-a-half-day long seminar focused on OI research. Lars Folkestad, member of OIFE’s Medical Advisory Board, joined the meeting in April and reports about it.   Collaboration…

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CONFERENCES

OIFE at EURORDIS Meeting

Written by Lars Romundstad, OIFE volunteer from Norway  EURORDIS is the umbrella association for organizations for rare conditions in Europe. And the 26th and 27th of May 2023, OIFE was represented at the EURORDIS Membership Meeting in Stockholm.  Lars Romundstad, represented the OIFE together with Rebecca Tvedt Skarberg, who is also a Board member of…

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Streaming of “Balancing Life with OI”

OIFE’s 5th Topical Meeting “Balancing Life with OI” will take place in Stockholm, Sweden, from June 9-10 2023. The main topic of this international conference is pain in OI and its impact on physical and mental health, sleep, fatigue, mobility, relationships/families and work/life balance. The scope will also cover other rare bone conditions.  Anyone interested in the…

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ADVOCACY

OIFE in Bologna

The OIFE was well represented at the spring meeting of the European Reference Network for Rare Bone Diseases (ERN BOND) in Bologna the first week of May. ERN BOND brings together 53 health care providers (hospitals) that deal with rare bone conditions. 40 people attended face to face and 13 online. In addition to several…

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